ESPE Abstracts

Congenital adrenal hyperplasia (CAH) is one of the commonest forms of primary adrenal insufficiency with an incidence of about 1 in 15,000. Several studies highlighted the suboptimal health status and care provision in adults with CAH that were associated with significant co-morbidities in relatively young adults. The onset and progression of problems and their interrelation with clinical management remain unclear. However, it appears of paramount importance to prevent and reduce co-morbidities from an early age. Clinical practice guidelines for the management of CAH exist since over 20 years. However, significant differences in the approach to the individual with CAH can still be observed. This applies to all aspects of management and even includes the treatment with glucocorticoids and mineralocorticoids as well as the ongoing debate about therapy control and monitoring. Despite the significant variability of patients care, the long-term consequences of different approaches have never been systematically compared. Furthermore, current studies reporting health data have a significant risk of selection bias in particular when large single centre cohorts are reported. The overall situation of care provision in specific countries and at international level remains unclear. Clinicians’ perception of services and that of patients, parents and career seem to vary in parts illustrating the need to further develop services according to patients’ needs. Ongoing data collection and analysis as well as service evaluation and bench marking of clinical practice would very likely improve the overall management. This should become a mandatory cornerstone of service provision similar to other conditions such as type 1 diabetes where such an approach has resulted in major improvements of care provision.